It's been a while since I've done a prayer request, but I am going to do one now. Tomorrow we head to Iowa City with Kai again. AAANNNDDD since I can never sleep on the night before big appointments, I figured I might as well update my blog! Most of you are aware that since the surgery to correct his tethered spinal cord, his bowel and bladder functions have not been what they should be. Basically, from what I understand, his bowel and bladder muscles and the associated sphincters do not work in unison like a normal persons would. For example, when a normal person goes to the bathroom, their bladder contracts and the sphincter relaxes so they can empty their bladder and then when they are finished the sphincter contracts and the bladder relaxes. (Medical people, please correct me if I am not right, cuz this stuff can get pretty confusing.) Kai's body doesn't work like that. Somehow during that surgery, some damage must have been done to the nerves. Now, I am NOT saying that his doctor did any damage or anything of that nature. We were told that when that cord was released it was just like a rubber band snapping back-there was THAT much tension on it. So when you go from that much tension to releasing it, there is bound to be some damage. Shortly after his spinal surgery, a little over a year ago, they did a urodynamics test on him, where basically they see how much fluid they can put into his bladder before he would start peeing. His body was supposed to hold around 90cc of fluid. The tech stopped putting fluid in at a little over 200cc. He still hadn't peed, so they had to take it all out with a catheter. Since then we have been going every 3 months to see a peds urologist who does ultrasounds of his kidneys to make sure that urine isn't refluxing back into them, and all of those have thankfully been clear. He also has not had any urinary tract infections which are another indicator of bad stuff happening. So we do have stuff to be thankful for. The way it was explained to me was that as he moves around, etc it causes the urine to kind of leak out. This has really not been an issue since he obviously wears diapers and it's no big deal. Now we are getting to the age where I would normally kind of start potty training, but how in the world do you potty train the child who has no control at all? Potty training is hard enough when they do!! :) So that is kind of tough for this momma's heart. When he was little and the diapers were obvious it's not such a big thing. But as he is growing up, it's becoming more obvious that he has disabilities and I don't think any parent WANTS their child to be disabled in any way, shape, or form, so that is going to take some getting used to on my part. It's tough to think about things like sending him to preschool not wearing big boy undies like the other kids, and having to try to figure out when the right time to start doing catheters is, if it comes to that. It's having to try to figure out the perfect balance of Miralax and food so that his stools are soft enough that they come out, but not so much that he has diarrhea and worrying that kids can be mean to those that are slightly different. I have to keep reminding myself of all the good though. He is the smartest, funniest, most adorable little spitfire ever. He is running and jumping and climbing and riding scooters and trying to ride a bike like the big kids. There is not a THING wrong with that little smarty-pants's brain, and his smile is absolutely infectious. He loves his mommy and loves to play tackle and wrestle and crash things together. I am so blessed.
So now to the prayer request. Tomorrow Sam, Kai and I head to Iowa City. They are going to repeat the urodynamic test to see if there is any improvement, and that will also tell us if Kai has any feeling in his "boy parts" because at the last test, there was none. I am pretty sure I know what the outcome of the test is going to be, but to have it be official is going to be hard. It's almost like I can still pretend until I see it on paper or hear it from a doctors mouth. So if you would pray for my sweet little man that all his tests would go well and quickly and easily and painlessly, and for his mommy and daddy to make the right decisions if any need to be made and to ask the right questions. And maybe even a quick one for his Momma's heart to be strong? I know God is able, but I also know that sometimes His answer, even when we pray SO hard for it to be Yes, is No. I can't see the big picture, but He can, so that's where I am trying to place my heart. Thanks for the prayers~
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